Over the Christmas holidays, I introduced myself as an adult to the dermatologist who gave me a pretty dismal prognosis as a baby. He pretended not to remember me until he told me I always had blocked ears.

I think he was surprised to see me. I told him some of my achievements including how I am now educating dermatologists about my condition (something he needed when he treated me).

I grew up in a small town with one dermatologist. He had very poor bedside manner and made some terrible assumptions of the way my parents looked after me. Needless to say, I was transferred to a paediatrician very quickly!

And like many parents of children with disabilities, mine were told to prepare for the worst. I was diagnosed correctly with Ichthyosis at birth. At first they were told I would be ‘better’ in a few weeks. And then when it was apparent my condition was worsening, they were told that they were not looking after me. At seven months, I was bundled into my parents’ arms – they were told to take me home to prepare for my death. There didn’t seem to be much talk of what I could achieve with the right medical treatments and support.

And so I lived past seven months, reaching milestones in my own time. Then I surpassed seventeen months, seven years, seventeen and twenty seven. I am still here today.

That doctor did not see potential. He saw a diagnosis, a prognosis, possibly an outcast and a life to grieve over. I proved him wrong.

Other people with Ichthyosis tell me that doctors didn’t give them a chance either. My friends have said that their parents were told they wouldn’t make it into mainstream school, that they wouldn’t have relationships or children, and that they would be social outcasts. These friends are university educated, in relationships and some have children. And a friend who’s a parent was told that they should be preparing for the worst after their child was born with Ichthyosis – even advised to start preparing for a funeral service. Her little girl is now six.

At Stella Young’s memorial, her close friend Bryce spoke about how the doctors told her parents to start grieving for the child that she wasn’t when she was born. They never grieved, they had not lost anything. Like my parents, they gave her the best possible life, instilling pride through being proud, never doubting her abilities. Bryce said Stella’s parents “didn’t see disaster when people around them could see little else”, and “She was the eldest daughter and sister of a family that would get on with the job of living.” They gave her the resources to succeed, a name that means star, and she outshone those doctors’ expectations.

The political models of disability can determine a person’s compassion and empathy towards disability. And so a doctor’s low expectations for a baby born with a disability can set the scene for their attitude through the lifespan of that patient. Perhaps because of the medical model of disability, (where disability is viewed as a problem that belongs to the person with a disability), doctors only see a diagnosis, and not a person. They may not believe a patient with a disability is capable of being educated or empowered about their own healthcare. Yet if doctors studied the social model of disability (that the physical and attitudinal barriers are a a cause of society and can be removed), they’d have greater training and compassion for patients with disabilities.

“While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.”

“More than half of medical school deans report that their students aren’t competent to treat people with disabilities, and a similar percentage of graduates agree. Accreditation and licensing boards don’t require clinicians to demonstrate knowledge or skills in treating patients with disabilities.

Numerous studies have found people with disabilities receive inferior health care, including less information about prevention and fewer screening tests.

Mistaken assumptions are a big reason. Doctors and nurses have expressed surprise to me when I explained that they have to discuss risks and benefits with patients who are cognitively impaired. Some doctors are also surprised to learn that they need to ask someone who has a physical disability about sexual activity.”

And the New York Times cites how little training doctors had in managing patients with disabilities. Pauline W Chen MD writes of doctors being unaware of how to manoeuvre patients in and out of wheelchairs safely and with dignity, lack of physical access to medical buildings, and the lack of disability training doctors receive. In some cases, doctors didn’t complete the medical exam on the patient because they didn’t have the correct supportive equipment nor a care plan to safely assist them.

It’s this extra care – the physical care and the social care – that is needed to empower patients. Doctors need to move past the textbook and immerse themselves in the disability community to truly learn and empathise with our experiences.

(On a side note, sometimes I go to hospital with a non-skin related ailment. A sore throat, for example. And the doctor is so focused on my skin, sometimes marvelling at the medical miracle sitting before them, that I feel like I am a rare patient coming to life from their textbooks. Really, I just want a doctor’s certificate and a script for antibiotics.)

I went to hospital earlier this year. I was so sore, and a bit miserable. I saw a junior doctor, one I had not seen before. I spent an hour in the consult room, talking to her about Ichthyosis, but also my job, blogging, wedding plans, travel and the Australian Ichthyosis meet. She said I was the first patient she’d met with Ichthyosis and she wanted to learn more than what she’d seen in the textbook. Her supervisor came in to provide further input into my treatment. Again, we talked about life, not just Ichthyosis.

And she told this junior doctor how lucky they are to have me as their educator. What a compliment.

I am so lucky to feel empowered as a patient at my hospital. These doctors listen to me. They treat me as a person not a diagnosis. They see my potential and are proud of my achievements. Their compassion means I am a human being first.

Comments

What I also think is wonderful Carly is that you educate us – I would know nothing about Ichthyosis until I started to read your blog – and I hope that as my own understanding grows, my capacity to be just a general better human being.

Hi Carly, Your post is fascinating. I have never heard of Ichthyosis and I am going to poke around here a bit to learn more about it. I have been to some doctors who have been very condescending and yes, did not treat me like a person. It's unfortunate that in some smaller towns or rural neighborhoods people have to settle for the type of medical care that they can physically reach. I love that you are educating medical professionals about your disability and possibly touching another patient's life in such a positive way. Thanks for sharing your experiences today.

Wow you are such a role model and have over come ALOT I love that you have such confidence.you are an inspiring and beautiful woman I've learned ALOT from you.as how hi I can raise my head and not be ashamed of wh I I am

When I had my son, I was told that he couldn't go to daycare, couldn't participate in most activities and would have to have a very thick layer of cream all the time ( and she even demonstrated this with with about an inch with her fingers). That was how she broke the diagnosis and explained ichthyosis to us. This affected me for a good 5-6 years. She did not realise (or care) that this was MY son and that I was a first time mum. I felt so helpless and when she gave us the diagnosis , she just left. I didn't know the first thing about caring for my child and we were left to deal with this on our own. My son is a resilient, positive, boy who plays soccer, attended daycare from the age of 1, is going to his first camp this year, has a huge group of mates, and participates in 99% of activities that he is interested in. He has definitely proved her wrong. I strongly feel that some doctors forget that the parents are people with feelings. I understand that it may be difficult for them to break the news, but they need to realise that it's more difficult and overwhelming for parents to hear this news about their child. Again, thanks Carly for sharing this with us and for raising awareness. I'm sure that all that read your blogs feel better knowing that they are not alone.}

I was one of those "take her home and plan for her burial" babies. Then it was "Well, she'll be mentally retarded." Then "She surely won't make it to adulthood."

I'm 42. I went to university and got a degree, I learned French, some Spanish and German, I've worked though I am now on disability. Every birthday I honestly feel like flipping the medical industry the bird as a "Hah! Not so full of yourself now, are you?"

When my niece was born with Down Syndrome, my sister's OB said, "I'm sure she will be a productive member of society". He was very positive and very correct! Not all doctors are like this. This goes for all conditions and disabilities. Doctors and others need educating, but so do we. We don't know everything either do they. It's about compassion. It goes both ways.

Thanks. Awesome post. I have heard of Icthyosis but have never seen it first hand. Thanks for the education… I hit the links in this post! Im glad youve found support in your local medical system…not an easy feat I know!

I actually find it hard to believe and very disheartening that Dr's are still responding to parents of kids with disabilities in this way. It's almost like a re-education needs to occur, and good on you for being part of that. But gosh, some of their attitudes seems very outdated…..

"They treat me as a person not a diagnosis." I love this line! While I don't have a physical disability, unless you count chronic fatigue, I do have several mental health issues. I've sat there and known the doctor or clinician was no longer listening to me try to tell them how I am and what's wrong because they've heard I've had panic attacks or depression and immediately decided that's the problem again. And since there's only so much they know how to do to help those, they kind of throw their hands up and say to wait it out a bit longer and good luck!

I am so very proud of you for being an advocate and educator. I am usually using all my energy to just get my own needs met and to be heard. To go beyond that and take care of others by teaching their doctors is amazing!

Thank you for sharing your post, for truly teaching me something. It matters!

This is so necessary!! The more we can get patient experiences to Drs the better, it creates more thoughtfulness and mindfulness and self-reflection on how Drs approach or deal with issues. I think children who have to deal with medical procedures in their life time are at risk of developing symptoms that can relate to trauma-responses. I know in my case, when I was about 9 I was taken into theatre and was forcedly held down and restrained by surgeons who had to fight extremely hard to get a gas mask on me as I was flailing, screaming and very distressed. I can vividly remember the smell of that particular experinece and every time I smell antiseptic, or bubble gum or pure alcohol it triggers flashbacks and that feeling of terror. I get that really creeped out feeling whenever I have to go into hospitals and it has taken me years to get past the irrational fear and anxiety I had about going to Drs or Hospitals. I'm finally able to "manage" my anxiety a bit better now as an adult. But the surgeons could have minimised the trauma impact of an experience like that by handling the situation very differently…

As read/heard on

Listen to my podcast

Tune in

Enter your email address to receive new posts by email.

Email Address

Copyright

The material on Tune into Radio Carly is copyright.
The writing in this blog is by Carly Findlay unless otherwise stated.
Most photos in this blog are by Carly Findlay unless otherwise stated.
Please do not reproduce without permission from Carly Findlay.
This blog represents my personal opinions and experiences. It does not reflect those of my employers'.
The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.